Pulmonary Hypertension Awareness Month Announced in Congress

U.S. Rep. Jamie Raskin (D-MD), submitted remarks earlier this month recognizing November as Pulmonary Hypertension Awareness Month. His full comments, included below, informed Congress about the severity of pulmonary hypertension and the importance of prompt diagnosis, effective treatment and a cure.

HON. JAMIE RASKIN
of Maryland
in the house of representatives
Friday, November 16, 2018

Mr. RASKIN. Mr. Speaker, I rise today in recognition of Pulmonary Hypertension (PH) Awareness Month and the outstanding work of the Pulmonary Hypertension Association in the fight against this rare and debilitating disease.

PH is a type of high blood pressure that occurs in the arteries of the lungs. It reflects the pressure the heart must apply to pump blood from the heart through the arteries of the lungs. As with a tangled hose, pressure builds up and backs up, forcing the heart to work harder and less oxygen to reach the body. PH symptoms generally include fatigue, dizziness, and shortness of breath with the severity of the disease correlating with its progression. If left undiagnosed or untreated it can lead to heart failure and death.

When individuals are diagnosed with PH quickly and begin appropriate therapy, their prognosis and life-expectancy improve dramatically. However, it currently takes an average of 2.5 years to receive a diagnosis and three quarters of patients have severe PH when they are finally diagnosed. Without treatment, historical studies have shown a mean survival time of 2.8 years after diagnosis for pulmonary arterial hypertension. Patients with advanced PH cannot benefit as greatly from available therapies and often face dramatic and costly medical interventions, including 24-hour IV infused medication, increased risk for hospitalization and in some cases heart-lung transplantation.

I am proud to represent the Pulmonary Hypertension Association, which is headquartered in my district in Silver Spring, Maryland. The Association is dedicated to extending and improving the life of those affected by PH and was the first organization in the world dedicated to providing comprehensive PH patient and caregiver support, medical education, specialty care services that improve patients’ quality of life, and research funding. Thanks in large part to the Pulmonary Hypertension Association’s advocacy for continued investment in medical research and sustained scientific progress, there are 14 Food and Drug Administration-approved targeted treatment options for two forms of PH. Additionally, their efforts to establish a PH Program at the CDC focusing on education, awareness, and epidemiology activities that promote early and accurate diagnosis and quality care for PH are to be commended.

Mr. Speaker, I encourage my colleagues to join me in recognizing November as Pulmonary Hypertension Awareness Month and to continue supporting federal activities that improve the lives of those with PH, including research programs at the National Institutes of Health and the Centers for Disease Control and Prevention.

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas